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Gained 10 lbs in 1 month on desiccated thyroid
I've had Hashomoto's for 8 years and 8-9 months ago my thyroid went out of whack. I experienced strange symptoms, such weight gain, palpitations and extreme sleepiness but at some point my weight went back to normal. Most of my symptoms went away when I was put on desiccated thyroid and I’ve been on this medication since September. I feel a lot better, but now I’m gaining weight again :(.
The thing is that my test results are pretty normal (except for the tg which is usually negative) and I really don’t get why I’m gaining weight. Over the past month I’ve worked out approx 6 hours per week and my workouts have been relatively intense. I generally eat less than 2000 calories per day. Heck, I’ve been consuming less calories than I was the last time I gained 10+ lbs and I've been putting on weight a lot faster. Based on this calculator: https://www.thecalculatorsite.com/health/bmr-calculator.php I'm supposed to be eating 2000+ calories per day to maintain my normal weight. Something’s definitely off.
Here are my most recent test results, from 2-3 weeks ago:
TSH: 0.05 L (0.3-4.0)
FT3: 3.6 (2.5-5.9), bottom 32%
FT4: 14 (9-19) , right at 50%
TPO: 380 H (<40)
TG: 130 H (<40) <- this antibody was negative in August
Has anyone experienced this? What did you do?
The thing is that my test results are pretty normal (except for the tg which is usually negative) and I really don’t get why I’m gaining weight. Over the past month I’ve worked out approx 6 hours per week and my workouts have been relatively intense. I generally eat less than 2000 calories per day. Heck, I’ve been consuming less calories than I was the last time I gained 10+ lbs and I've been putting on weight a lot faster. Based on this calculator: https://www.thecalculatorsite.com/health/bmr-calculator.php I'm supposed to be eating 2000+ calories per day to maintain my normal weight. Something’s definitely off.
Here are my most recent test results, from 2-3 weeks ago:
TSH: 0.05 L (0.3-4.0)
FT3: 3.6 (2.5-5.9), bottom 32%
FT4: 14 (9-19) , right at 50%
TPO: 380 H (<40)
TG: 130 H (<40) <- this antibody was negative in August
Has anyone experienced this? What did you do?
Make sure you are eating enough for your activity level. I found out I was drastically undereating for the amount of exercise I was doing when using myfitnesspal. If you eat less you slow down metabolism.
4 Comments
Thank you Red_Star. The thing is that the more I eat the more weight I put on. That's exactly the issue. Putting on 10 lbs in 1 month is extremely unhealthy and I'm concerned that if I eat more I'm going to gain more weight even faster (20 lbs in 1 month? nooooo!). I looked it up and it means that I eat around 400-500 calories more than I burn every day doesn't it? (which means that my metabolism is crawling worse than that of a 100 year old who's hasn't worked out a day in their lives, wtf is going on?).
Btw, I eat lots of protein and I am getting stronger and fitter doesn't that mean that I consume enough calories for what my body needs?
Hypothyroidism slows down metabolism too of course so you might find a slight adjustment in thyroid medication might be the answer. It's just that you mentioned the weight gain only occurred a month ago when you started intense exercise so that is why I mentioned it.
Oh, I've been doing intense exercise for years. It's just that I suddenly gained those 10 lbs with no change in diet or anything.
I don't agree that your test results are normal. First thing to be aware of is that hypothyroidsim is not just "inadequate thyroid hormnoe". Instead it is insufficient T3 effect in tissue throughout the body due to inadequate supply of, or response to, thyroid hormone. So a patient's thyroid status is related to TISSUE T3 EFFECT. Since there are no direct measures that are adequate diagnostics of TISSUE T3 EFFECT, indirect measures are necessary. Of those the most important are symptoms that occur more frequently with hypothyroidism, supported by expanded blood tests for Free T4, Free T3, initially Reverse T3, cortisol, Vitamin D, B12 and ferritin. The latter 4 have a direct effect on the response to thyroid hormone and related symptoms. So please tell us about all the symptoms you still have.
Your FT4 is adequate. Your Free T3 is too low to relieve hypo symptoms,for many people. There is a recent scientific study that concluded, "Hypothyroid
symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range." Your FT3 is a long way from that, which is somewhat surprising since FT3 is usually higher in range than FT4 when taking desiccated thyroid med. So that raises a couple of additional questions. What is your daily dose of desiccated med? Do you take your thyroid med in the morning before the blood draw for thyroid tests? What could be the cause for your relative FT4 and fT3 levels?
Obviously you need to raise your FT3 level, but before making a decision about how to proceed, you need more information to help understand why your FT3 is lower than FT4, within their ranges. Tests for RT3 and ferritin might help clarify that. So do you think you can get those seven tests done, while postponing your morning dose of thyroid med until after the blood draw? If so, please do so and then post results and reference ranges shown on the lab report and we will be happy to help interpret and advise further.
Your FT4 is adequate. Your Free T3 is too low to relieve hypo symptoms,for many people. There is a recent scientific study that concluded, "Hypothyroid
symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range." Your FT3 is a long way from that, which is somewhat surprising since FT3 is usually higher in range than FT4 when taking desiccated thyroid med. So that raises a couple of additional questions. What is your daily dose of desiccated med? Do you take your thyroid med in the morning before the blood draw for thyroid tests? What could be the cause for your relative FT4 and fT3 levels?
Obviously you need to raise your FT3 level, but before making a decision about how to proceed, you need more information to help understand why your FT3 is lower than FT4, within their ranges. Tests for RT3 and ferritin might help clarify that. So do you think you can get those seven tests done, while postponing your morning dose of thyroid med until after the blood draw? If so, please do so and then post results and reference ranges shown on the lab report and we will be happy to help interpret and advise further.
Thank you Gimel.
Current symptoms:
Rare heart PVCs (they're significantly less frequent than the ones I had before and they don't wake me up anymore)
Relatively mild memory issues (they used to be severe)
My "Hashimoto's face" is almost gone
Mild sensitivity to touch where the thyroid is located (in the past I couldn't touch it at all without it feeling extremely uncomfortable). I think this is as good as it can get.
Weight gain - 10 lbs within a month
NOTE: I'm deathly scared to go hyper because of my past experiences
I'm currently on 30 mg once a day (I was on 45 mg until last week) but other than the extreme weight gain I feel well (for the first time in like forever...). I'm going to try to get my PCP to check my ferritin and cortisol levels, but I'm not sure it's going to happen.
Reverse T3 - this test too expensive. I don't think my insurance covers this.
Vitamin D - I take a supplement anyway so checking this probably won't change anything
B12 - my B12 was recently checked and it was the upper half of the reference range.
FT3, FT4 - my thyroid doctor wants to retest those and the antibodies, so that's definitely happening
I didn't take my thyroid medication before the blood draw.
My FT3 was the main problem before I was put on medication. It was at 12%. My FT4 was at ~30%, 18% higher than my FT3. My levels may be higher now but my FT3 is still 18% lower than my FT4, just like it was before.
Current symptoms:
Rare heart PVCs (they're significantly less frequent than the ones I had before and they don't wake me up anymore)
Relatively mild memory issues (they used to be severe)
My "Hashimoto's face" is almost gone
Mild sensitivity to touch where the thyroid is located (in the past I couldn't touch it at all without it feeling extremely uncomfortable). I think this is as good as it can get.
Weight gain - 10 lbs within a month
NOTE: I'm deathly scared to go hyper because of my past experiences
I'm currently on 30 mg once a day (I was on 45 mg until last week) but other than the extreme weight gain I feel well (for the first time in like forever...). I'm going to try to get my PCP to check my ferritin and cortisol levels, but I'm not sure it's going to happen.
Reverse T3 - this test too expensive. I don't think my insurance covers this.
Vitamin D - I take a supplement anyway so checking this probably won't change anything
B12 - my B12 was recently checked and it was the upper half of the reference range.
FT3, FT4 - my thyroid doctor wants to retest those and the antibodies, so that's definitely happening
I didn't take my thyroid medication before the blood draw.
My FT3 was the main problem before I was put on medication. It was at 12%. My FT4 was at ~30%, 18% higher than my FT3. My levels may be higher now but my FT3 is still 18% lower than my FT4, just like it was before.
I am surprised at your FT4 and FT3 levels. I say that because your TSH is suppressed (not that it is a problem) so your thyroid gland is not being stimulated to produce hormone. Yet, your FT4 is mid-range and FT3 at 32% of their ranges. Your 45 mg of desiccated thyroid med is nowhere near enough to account for those levels. I wonder if your thyroid gland, even with no TSH stimulation, might be leaking hormone due to the continuous attack from the autoimmune antibodies. An ultrasound of the gland would identify its condition, but it would not really change what you need right now, which is to increase your medication and get your Free T3 high enough to relieve hypo symptoms.
From your symptoms and test results there is no need to fear going hyper. You are a long way from that. I suspect that your doctor reduced your meds because of your TSH level. That is unfortunate that he does not recognize the difference between a suppressed TSH in the treated state versus a suppressed TSH in the untreated state. In the untreated state our bodies are used to a continuous low flow of thyroid hormone. When you take your daily thyroid med in only one or two doses, it tends to suppress the TSH for a full day. So when taking thyroid med a TSH test is basically a waste of money. This is the reason for the quote above,"Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
Several possibilities I can think of for the FT3 being lower than FT4. One is that T4 is being converted to Reverse T3, rather than T3. RT3 is an antagonist of T3. Excess RT3 can cause hypo-metabolic effects. I would use that argument to push for the test. Another possible cause could be low ferritin levels. Hypothyroid patients are frequently deficient in ferritin. Ferritin is important to good conversion of T4 to T3. So that needs to be tested. Vitamin D is also important. How much are you supplementing daily?
Since your doctor reduced your med, I am concerned that he might be one that thinks TSH is the best indicator of thyroid status, and treats accordingly. In actuality a good thyroid doctor will treat clinically, for symptoms, by adjusting FT4 and FT3 levels as needed to relieve symptoms, without being influenced by resultant TSH levels. Symptom relief should be all important, not just test results. So you may have to give the doctor enough info to persuade him to treat clinically. I suggest that you click on my name and then scroll down to my Journal and read at least the one page Overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective. You can give this info to your doctor also. If the doctor refuses to do these things then you will need to find a good thyroid doctor that will do so.
From your symptoms and test results there is no need to fear going hyper. You are a long way from that. I suspect that your doctor reduced your meds because of your TSH level. That is unfortunate that he does not recognize the difference between a suppressed TSH in the treated state versus a suppressed TSH in the untreated state. In the untreated state our bodies are used to a continuous low flow of thyroid hormone. When you take your daily thyroid med in only one or two doses, it tends to suppress the TSH for a full day. So when taking thyroid med a TSH test is basically a waste of money. This is the reason for the quote above,"Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
Several possibilities I can think of for the FT3 being lower than FT4. One is that T4 is being converted to Reverse T3, rather than T3. RT3 is an antagonist of T3. Excess RT3 can cause hypo-metabolic effects. I would use that argument to push for the test. Another possible cause could be low ferritin levels. Hypothyroid patients are frequently deficient in ferritin. Ferritin is important to good conversion of T4 to T3. So that needs to be tested. Vitamin D is also important. How much are you supplementing daily?
Since your doctor reduced your med, I am concerned that he might be one that thinks TSH is the best indicator of thyroid status, and treats accordingly. In actuality a good thyroid doctor will treat clinically, for symptoms, by adjusting FT4 and FT3 levels as needed to relieve symptoms, without being influenced by resultant TSH levels. Symptom relief should be all important, not just test results. So you may have to give the doctor enough info to persuade him to treat clinically. I suggest that you click on my name and then scroll down to my Journal and read at least the one page Overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective. You can give this info to your doctor also. If the doctor refuses to do these things then you will need to find a good thyroid doctor that will do so.
7 Comments
Thank you Gimel. Why would T4 be converted into RT3 instead of T3? Is this related to Hashimoto's somehow? If that's the problem what can I do to make my body convert it to T3 instead or to stop producing it?
Ferritin - I keep forgetting to get a ferritin supplement. I really need to do that. Most females have low ferritin levels, so I'm assuming mine are too.
Vit D - I use a cream because my body can't absorb vitamin D from capsules. It's 10000 IU.
I downloaded and read "Overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective" back when I was trying to convince my cardiologist to to do a thyroid medication trial for the PVCs. I used this article to convince my PCP to check my FT3 and FT4.
My thyroid doctor temporarily lowered my dose because my body was responding really fast. She said that the effects are supposed to be cumulative so lowering the dose for a little bit wouldn't make my thyroid worse. If I'm still having symptoms in 4-5 weeks she'll up the dose. She also wants to recheck my levels before my next appointment.
Ferritin - I keep forgetting to get a ferritin supplement. I really need to do that. Most females have low ferritin levels, so I'm assuming mine are too.
Vit D - I use a cream because my body can't absorb vitamin D from capsules. It's 10000 IU.
I downloaded and read "Overview of a full paper on Diagnosis and Treatment of Hypothyroidism: A Patient's Perspective" back when I was trying to convince my cardiologist to to do a thyroid medication trial for the PVCs. I used this article to convince my PCP to check my FT3 and FT4.
My thyroid doctor temporarily lowered my dose because my body was responding really fast. She said that the effects are supposed to be cumulative so lowering the dose for a little bit wouldn't make my thyroid worse. If I'm still having symptoms in 4-5 weeks she'll up the dose. She also wants to recheck my levels before my next appointment.
No, conversion of T4 to RT3 is believed to be due to the following abnormalities:: “Leptin resistance; Inflammation (NF kappa-B); Dieting; Nutrient deficiencies such as low iron, selenium, zinc, chromium, vitamin B6 and B12, vitamin D and iodine; low testosterone; low human growth hormone; Insulin dependent diabetes;pain; stress; environmental toxins; free radical load; haemorrhagic shock; liver disease; kidney disease; severe or systemic illness; severe injury‟, surgery; toxic metal exposure”. Take your pick. From the list, for a hypothyroid patient I am usually suspicious of the B vitamins, Vitamin D, and ferritin. You can supplement for ferritin with a good iron supplement like Vitron C, which gives you 65 mg daily. For Vitamin D you could increase the cream. 1000 IU is not very much. It is good to optimize those anyway, even if RT3 is not a problem.
I also meant to mention that you will find the above info on RT3 on page 13 of the full paper that is linked in the Overview.
Oh, ok. Thank you Gimel.
I finally got an iron supplement. They don't sell the one you recommended here in Canada so I got Jamieson Gentle Iron (it also has vitamin C in it). I decided to get a gentle form of iron because my stomach is very sensitive.
I went to see an MD a few days ago (my PCP wasn't there that day) and I was able to convince her to do a full thyroid panel (FT3, FT4, TSH, TPO, TG) + ferritin. It wasn't easy since she's not my doctor and I recently had blood work done so I didn't want to push it. I tried to ask for Reverse T3 but she said she'd never heard of that.
I went to see an MD a few days ago (my PCP wasn't there that day) and I was able to convince her to do a full thyroid panel (FT3, FT4, TSH, TPO, TG) + ferritin. It wasn't easy since she's not my doctor and I recently had blood work done so I didn't want to push it. I tried to ask for Reverse T3 but she said she'd never heard of that.
How much iron is in a tablet of the Jamieson Gentle Iron?
Reverse T3 was not included in her studies at the med school where she went?
By the way, for the future, there is no need to keep testing for the autoimmune antibodies, or really TSH either. Further tests don't really provide any info that helps in your treatment. Treatment must be to achieve symptoms relief, not test results.
Please let us know results of your tests.
Reverse T3 was not included in her studies at the med school where she went?
By the way, for the future, there is no need to keep testing for the autoimmune antibodies, or really TSH either. Further tests don't really provide any info that helps in your treatment. Treatment must be to achieve symptoms relief, not test results.
Please let us know results of your tests.
Thank you Gimel. There's 28 mg of iron in Jamieson Gentle Iron. I have gastric issues that affect my heart (roemheld syndrome/gastric cardia). I don't think I'm going to be able to tolerate more than 28 mg. Is there an iron patch I can get?
The medical system is very different here in Canada. Maybe RT3 isn't included in the curriculum unless you specialize in endocrinology (she's an internal medicine doctor). Most of the internal medicine doctors I've seen around here didn't seem to know much about thyroid health and related blood work. That's why they keep trying to convince me to see an endocrinologist.
My thyroid ND asked to recheck the antibodies. I don't know why.
The medical system is very different here in Canada. Maybe RT3 isn't included in the curriculum unless you specialize in endocrinology (she's an internal medicine doctor). Most of the internal medicine doctors I've seen around here didn't seem to know much about thyroid health and related blood work. That's why they keep trying to convince me to see an endocrinologist.
My thyroid ND asked to recheck the antibodies. I don't know why.
I forgot to mention I had numerous symptoms of overexercising when I was weight training 2 hour sessions every second day. I had to cut back to 1 hour sessions 3 times a week.
There is an indepth article on overtraining is from Jason's Take - Never Ignore These 10 Signs Of Overtraining...I can't post much because he cusses a lot lol. Here are a few paragraphs...
"Body Fat Storage
Overtraining creates body fat storage – period.
And no amount of fueling is going to prevent it.
As Aquila Norazman shares about a client who was lifting all the time and training for a marathon:
She came back to me the next day with a scanned copy of her results, markedly showing that she has gained 10% body fat in six months."
"Hard bouts of exercise release cortisol.
Contrary to popular belief cortisol is not always a horrible villain. Don’t believe everything published.
The problem becomes when cortisol is elevated for extended periods of time. Ummm…. like when you are in idiot mode and putting yourself in an overtrained state."
lol. I know.
There is an indepth article on overtraining is from Jason's Take - Never Ignore These 10 Signs Of Overtraining...I can't post much because he cusses a lot lol. Here are a few paragraphs...
"Body Fat Storage
Overtraining creates body fat storage – period.
And no amount of fueling is going to prevent it.
As Aquila Norazman shares about a client who was lifting all the time and training for a marathon:
She came back to me the next day with a scanned copy of her results, markedly showing that she has gained 10% body fat in six months."
"Hard bouts of exercise release cortisol.
Contrary to popular belief cortisol is not always a horrible villain. Don’t believe everything published.
The problem becomes when cortisol is elevated for extended periods of time. Ummm…. like when you are in idiot mode and putting yourself in an overtrained state."
lol. I know.
Thank you Red_Star. I appreciate your help but I read the article and I only have 1 of the 10 symptoms. Also I'm gaining weight at an alarming rate, a lot faster than Aquila Norazman's client. The 10 lbs I gained in 1 month make up 8.5% of my body weight. I actually have a lot of energy and I keep getting stronger. I really enjoy my workouts and it would really suck to have to cut back :(.
1 Comments
Wow you can handle a lot more exercise than I can. I was toast! *cries* lol
I gained almost 6 kg in 3 months with untreated Hashimoto's thyroiditis. I found this article very interesting...
Excerpt from Hormones Rule Your World! Weight Loss – Staying Young – Sex Life – Your Health...
"With weight loss, hormone balance is the real master of your results – no matter how much dieting or exercise you do. For example low thyroid levels can cost you between 300 and 900 calories per day. Compare that with the fact that an average workout burns 500 calories and you can see the difficulties.
Similarly high levels of the stress hormone cortisol (a very common feature of modern day life) can cost you 200 to 300 calories per day.
High levels of the hormone insulin can stop fat burning cold no matter what you do. Many insulin taking diabetics can testify to this. However high insulin levels are becoming a feature of many people’s bodies due to our excessive intake of sugars, refined carbohydrates and alcohols.
Incorrect hormone levels can mean that you spend the whole day dieting and get very little results. You can get 2 people of the exact same size and weight, doing the exact same exercise and one gets way better results than the other – it is all down to hormones."
Excerpt from Hormones Rule Your World! Weight Loss – Staying Young – Sex Life – Your Health...
"With weight loss, hormone balance is the real master of your results – no matter how much dieting or exercise you do. For example low thyroid levels can cost you between 300 and 900 calories per day. Compare that with the fact that an average workout burns 500 calories and you can see the difficulties.
Similarly high levels of the stress hormone cortisol (a very common feature of modern day life) can cost you 200 to 300 calories per day.
High levels of the hormone insulin can stop fat burning cold no matter what you do. Many insulin taking diabetics can testify to this. However high insulin levels are becoming a feature of many people’s bodies due to our excessive intake of sugars, refined carbohydrates and alcohols.
Incorrect hormone levels can mean that you spend the whole day dieting and get very little results. You can get 2 people of the exact same size and weight, doing the exact same exercise and one gets way better results than the other – it is all down to hormones."
2 Comments
Thank you Red_Star. I guess I'm going to have to wait until I reach my maintenance dose for my weight to be normal and stable gain. I just hope that the weight gain is reversible and that I'm not 1000 lbs by then.
lol.
can you please post what your results are, my antibodies went up too on ndt.
3 Comments
My thyroid doctor wants to wait a few weeks before I get my levels checked again because it's only been a few weeks. I will post them as I have them.
Jenn1302 , do you have new results?
*as soon as
Jenn1302 , do you have new results?
4 Comments
Not yet. I'm probably going to have them in a few days. I'll make sure to post them on here :)
Jenn did you get your labs?
Question: is it possible you are pregnant?
Also b12 needs to be at least 700 if not 900 for many to feel well. So the range in the usa is wide and the lower part of the range is ridiculously low. So what was your actual b12 level?
Based on you preciois lab reaults it may make sense to further supplement with synthetic T3to get your free T3 level up. If your most recent tests show a similar trend.
That would be my opinion anyhow.
Overtraining can precent T3 from
Entering the cells. Even if T3 is in the blood . Over trainig can also increase cortisol.
My mom recently went hatd core keto diet. She lost weight initially and then nothing. She INCREASED her fat intake and water. Increased calories and LOST weight!
Just proves that calorie counting simply is not as clear cut way or just doesn’t always work.
Also b12 needs to be at least 700 if not 900 for many to feel well. So the range in the usa is wide and the lower part of the range is ridiculously low. So what was your actual b12 level?
Based on you preciois lab reaults it may make sense to further supplement with synthetic T3to get your free T3 level up. If your most recent tests show a similar trend.
That would be my opinion anyhow.
Overtraining can precent T3 from
Entering the cells. Even if T3 is in the blood . Over trainig can also increase cortisol.
My mom recently went hatd core keto diet. She lost weight initially and then nothing. She INCREASED her fat intake and water. Increased calories and LOST weight!
Just proves that calorie counting simply is not as clear cut way or just doesn’t always work.
1 Comments
Thank you flyingfool. I'm definitely not pregnant. My B12 is always close to the high end of the reference range. I wish I could supplement with synthetic T3, but my current doctor is only authorized to prescribe desiccated thyroid. I would have to see an endocrinologist and get them on board to get a prescription for Cytomel (but convincing an endocrinologist to prescribe T3 is next to impossible).
I've been managing my weight by following a very healthy diet (relatively low calorie, packed with vitamins and nutrients). It kind of sucked at first (and sometimes it still does), but now I'm closer to my original weight and look healthier than I have in years.
I've been managing my weight by following a very healthy diet (relatively low calorie, packed with vitamins and nutrients). It kind of sucked at first (and sometimes it still does), but now I'm closer to my original weight and look healthier than I have in years.
I recently had labs done. Here are the results:
TG: <20 (Ref < 40) Negative this time.
TPO: 770 H (Ref <40) This antibody always comes back high
TSH: 0.5 (ref 0.35-5.0) how is my TSH so low if my thyroid is failing? It should be 20.
FT3: 3.2 L (ref 3.4-6) that’ll explain the weight gain
FT4: 11 L (ref 12-22) that’ll explain the weight gain
Ferritin: 31 (ref 12-109) I’m taking a supplement
I’m on desiccated thyroid (30 mg). I didn’t take it the morning I did the labs (I waited for 26 hours).
My Tg came back negative this time. I’m glad it went back back down but is it normal for the Tg to fluctuate like this? It was positive a month ago.
My TPO basically doubled over the past month. Is this bad?
My FT3 and FT4 are officially too low for the first time ever (overt hypo). Now I know why I put on 10 lbs in 1 month. What’s interesting is that I feel relatively ok. Other than the weight gain and crawling metabolism, most of my hypo symptoms are nearly gone.
I think I finally figured out why I was still having symptoms when my FT3 was close to the middle of the reference range. Turns out that the lab changed the reference range. The low end was changed from 3.1 to 2.6 (most labs have it around 3.5!). I was having horrible symptoms at 3.5 so no, this new reference range doesn’t work Life Labs!
http://www.btf-thyroid.org/information/quick-guides/97-thyroid-function-tests
Based on the reference range they were using before my FT3 was at 16%. It’s better than the 12% I was at before but still significantly lower than the 30% I thought my levels were at. This time I went to a clinic that works with a different lab and surprise surprise my FT3 is really low again (this time it's out of range).
https://thyroidpatients.ca/2019/01/06/abbott-laboratories-reference-range-normalizes-lower-free-t3/
TG: <20 (Ref < 40) Negative this time.
TPO: 770 H (Ref <40) This antibody always comes back high
TSH: 0.5 (ref 0.35-5.0) how is my TSH so low if my thyroid is failing? It should be 20.
FT3: 3.2 L (ref 3.4-6) that’ll explain the weight gain
FT4: 11 L (ref 12-22) that’ll explain the weight gain
Ferritin: 31 (ref 12-109) I’m taking a supplement
I’m on desiccated thyroid (30 mg). I didn’t take it the morning I did the labs (I waited for 26 hours).
My Tg came back negative this time. I’m glad it went back back down but is it normal for the Tg to fluctuate like this? It was positive a month ago.
My TPO basically doubled over the past month. Is this bad?
My FT3 and FT4 are officially too low for the first time ever (overt hypo). Now I know why I put on 10 lbs in 1 month. What’s interesting is that I feel relatively ok. Other than the weight gain and crawling metabolism, most of my hypo symptoms are nearly gone.
I think I finally figured out why I was still having symptoms when my FT3 was close to the middle of the reference range. Turns out that the lab changed the reference range. The low end was changed from 3.1 to 2.6 (most labs have it around 3.5!). I was having horrible symptoms at 3.5 so no, this new reference range doesn’t work Life Labs!
http://www.btf-thyroid.org/information/quick-guides/97-thyroid-function-tests
Based on the reference range they were using before my FT3 was at 16%. It’s better than the 12% I was at before but still significantly lower than the 30% I thought my levels were at. This time I went to a clinic that works with a different lab and surprise surprise my FT3 is really low again (this time it's out of range).
https://thyroidpatients.ca/2019/01/06/abbott-laboratories-reference-range-normalizes-lower-free-t3/
3 Comments
are you going to increase your meds? what dose are going to do? and what med?
I'm on Desiccated Thyroid (30 mg every morning). I'm going to talk to my doctor and see what she says. I'm assuming she's going to up my dose.
I'm on 60 mg now (30 X 2)
UPDATE:
I got my test results a few days ago and my FT4 is still too low. My FT3 is "normal" but it's still very low. I don't get it. My dose was recently upped to 60 mg desiccated thyroid. Why are my levels getting worse? Shouldn't they be getting better? I do feel better.
TSH 1.10 (0.3-5)
FT3 3.6 (3.4-5.9), bottom 8.6%
FT4 9 (12-20) L
I didn't take my medication the day I went in for blood work (I waited 27 hours).
Symptoms:
Nausea (this one's new but it's getting better)
Slow metabolism (I gain weight a lot faster than I used to, but it's significantly better than it was 2-3 months ago)
Mild to moderate memory problems, depending on the day (significantly better than 2-3 months ago)
Dry skin
I sleep slightly more than I used to.
I got my test results a few days ago and my FT4 is still too low. My FT3 is "normal" but it's still very low. I don't get it. My dose was recently upped to 60 mg desiccated thyroid. Why are my levels getting worse? Shouldn't they be getting better? I do feel better.
TSH 1.10 (0.3-5)
FT3 3.6 (3.4-5.9), bottom 8.6%
FT4 9 (12-20) L
I didn't take my medication the day I went in for blood work (I waited 27 hours).
Symptoms:
Nausea (this one's new but it's getting better)
Slow metabolism (I gain weight a lot faster than I used to, but it's significantly better than it was 2-3 months ago)
Mild to moderate memory problems, depending on the day (significantly better than 2-3 months ago)
Dry skin
I sleep slightly more than I used to.
4 Comments
which ndt are you taking? how long were you on the 60 mg dose before testing? from these labs it looks like you will need an increase. Do you have issues with hair loss?
I'm taking Erfa. I've been on 60 mg for about 6 weeks. I had issues with hair loss before, but it was pretty mild (I'm sure some people have it worse when they're hypo) and it's better now.
what did your dr suggest, did he suggest an increase in dose?
My dr increased my dose by 5 mg. We're doing it slowly because I'm deathly afraid of going hyper.
Thyroid medication causes TSH to drop, and thus reduces output of natural thyroid hormone. Since serum thyroid levels are the sum of both natural thyroid hormone and any thyroid medication, only when TSH is suppressed below range, and no longer stimulating the thyroid gland, will further increases in thyroid med start to raise your FT4 and FT3 levels as needed to relieve hypothyroid symptoms.
You are not quite there yet, but note that taking significant thyroid med in only one or two doses daily, as compared to a continuous low flow of thyroid hormone in the untreated state, has been shown to cause suppression of TSH. A suppressed TSH when taking thyroid medication should never be diagnosed as hyperthyroidism, unless there are hyperthyroid symptoms due to excessive levels of FT4 and FT3.
As TSH becomes suppressed by the daily dose of thyroid med, the output of natural thyroid hormone is stopped, and the patient will thus need a full daily replacement amount of thyroid hormone from thyroid medication. Since the average normal secretion for euthyroid humans are 94-110 mcg of T4 and 10-22 mcg of T3 daily, that means the average person will need at least 2 grains (120 mg) of desiccated thyroid med, plus an additional amount to account for losses due to absorption being less than 100%. Also, everyone is different in their need for thyroid hormone. So you can see that you are a long way from being on an adequate dosage of medication. This is further evident from your symptoms.
You can find all this info in the paper you previously downloaded and gave to your doctor.
You are not quite there yet, but note that taking significant thyroid med in only one or two doses daily, as compared to a continuous low flow of thyroid hormone in the untreated state, has been shown to cause suppression of TSH. A suppressed TSH when taking thyroid medication should never be diagnosed as hyperthyroidism, unless there are hyperthyroid symptoms due to excessive levels of FT4 and FT3.
As TSH becomes suppressed by the daily dose of thyroid med, the output of natural thyroid hormone is stopped, and the patient will thus need a full daily replacement amount of thyroid hormone from thyroid medication. Since the average normal secretion for euthyroid humans are 94-110 mcg of T4 and 10-22 mcg of T3 daily, that means the average person will need at least 2 grains (120 mg) of desiccated thyroid med, plus an additional amount to account for losses due to absorption being less than 100%. Also, everyone is different in their need for thyroid hormone. So you can see that you are a long way from being on an adequate dosage of medication. This is further evident from your symptoms.
You can find all this info in the paper you previously downloaded and gave to your doctor.
1 Comments
Thank you Gimel. The thing is that my doctors here will probably never be ok with my TSH being completely suppressed (I live in Canada and they follow relatively strict guidelines here). Is there a way to get my FT3 and FT4 to acceptable levels (mid range-ish) without fully suppressing the TSH? (they're probably going to want it >0.5)
There was a study done that showed the effect on TSH levels, from splitting a significant dose of thyroid med into multiple doses. Normal, single doses of T4 med consistently suppressed TSH. By splitting the same dosage amount into 2 doses, it increased TSH levels, except at the higher dosages of 130 - 150 mcg of T4. By splitting the same dose into thirds, there was a further significant increase in TSH levels. So you might consider splitting your med into 3, or even 4 doses taken at different times of the day, to try and avoid the doctor's concern about suppression of TSH. Also you should keep pointing out to them that TSH is only a surrogate test for the actual thyroid hormones. It is your Free T4 and Free TT3 levels that are important.
You might also find useful this study that concluded: "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
https://www.ncbi.nlm.nih.gov/pubmed/29396968
There was also a study done with rats, which are good surrogates for test purposes: This study concluded that "Only a continuous infusion of T4 and T3 in the
same 6:1 ratio produced by the rat’s thyroid gland restored both serum and tissue levels of T4 and T3 to those of controls without suppressing the TSH." So here again it shows the suppressive effect is not there when there is continuous flow of thyroid hormone instead of a single dose.
You might also find useful this study that concluded: "Hypothyroid symptom relief was associated with both a T4 dose giving TSH-suppression below the lower reference limit and FT3 elevated further into the upper half of its reference range."
https://www.ncbi.nlm.nih.gov/pubmed/29396968
There was also a study done with rats, which are good surrogates for test purposes: This study concluded that "Only a continuous infusion of T4 and T3 in the
same 6:1 ratio produced by the rat’s thyroid gland restored both serum and tissue levels of T4 and T3 to those of controls without suppressing the TSH." So here again it shows the suppressive effect is not there when there is continuous flow of thyroid hormone instead of a single dose.
1 Comments
Thank you Gimel. Are sustained release capsules available for NDT? Where and how can I get them? What brands? I feel like that would be a good way to have continuous flow of thyroid medication throughout the day.
I don't know of any slow release NDT that is readily available. I will do some checking on that. You might be able to locate a compounding pharmacy that could take your NDT and add to it something that would slow the release. I doubt that it could be effective enough to provide continuous release throughout the whole day, but it could be better than current experience.
1 Comments
Thank you Gimel.
Just sent you a PM with info. To access, just click on your name and then click on messages.
Hi Jenn, I'm in Canada too. On thyroid hormones since 1980's. But really got in to researching thyroid stuff when I got atrial fibrillation a few years ago. I'm just gonna give you a few comments.
It appears that your doctor(s) are making the classic mistake in the way they are using ERFA - that is, ERFA and other natural desiccated thyroid (NDT) products are known to suppress TSH. If TSH is suppressed, your natural thyroid gland will not produce any thyroid hormone, and therefore if you give someone ERFA, you must give them a dose that fully replaces the output of a normal thyroid gland. They do not know this because they did not learn about NDT at doctor school, they only learned about Synthtoid which does not suppress TSH like NDT does.
So here is some ammo for you when next you meet the doctor - a normal functioning natural thyroid gland produces 90 to 100 mcg of T4 every day and around 6 mcg of T3. The 60 mg ERFA that you are taking contains 38 mcg T4 plus 9 mcg T3. It is very easy to see that 60 ERFA is a very long way from a replacement dose and anyone receiving only 60 mg would obviously be hypothyroid.
I presume that you were taking synthroid or similar before starting ERFA. If you don't get anywhere with the doc on upping the ERFA, you might be better off in the short run to revert back to synthroid, somewhere in the 100 to 125 mcg range, while you figure out what to do next.
Re slow release. First, if you go that way, you still need more than what you are getting now. I don't believe that you will find commercially available slow release NDT. The NDT that is in tablets is known to pharmacies as "Thyroid" or "Thyroid USP" or "Desiccated Thyroid USP" (see WIKI). Compounding pharmacies can make "slow release" or "sustained release" capsules for you. Simply phone a local compounding pharmacy and ask them.
Another option is synthroid along with slow release T3. That is what I use. The pharmacy calls the T3 "SR Liothyronine". I went that way after reading the paper cited below; there is a ton of practical advice in this paper.
Hypothyroidism: Optimizing Therapy with Slow-Release Compounded Thyroid Replacement, by Martin Milner, ND., published in International Journal of Pharmaceutical Compounding, July/August 2005.
which can be found here:
http://www.townsendletter.com/FebMarch2007/hypothyroid0207.htm
It appears that your doctor(s) are making the classic mistake in the way they are using ERFA - that is, ERFA and other natural desiccated thyroid (NDT) products are known to suppress TSH. If TSH is suppressed, your natural thyroid gland will not produce any thyroid hormone, and therefore if you give someone ERFA, you must give them a dose that fully replaces the output of a normal thyroid gland. They do not know this because they did not learn about NDT at doctor school, they only learned about Synthtoid which does not suppress TSH like NDT does.
So here is some ammo for you when next you meet the doctor - a normal functioning natural thyroid gland produces 90 to 100 mcg of T4 every day and around 6 mcg of T3. The 60 mg ERFA that you are taking contains 38 mcg T4 plus 9 mcg T3. It is very easy to see that 60 ERFA is a very long way from a replacement dose and anyone receiving only 60 mg would obviously be hypothyroid.
I presume that you were taking synthroid or similar before starting ERFA. If you don't get anywhere with the doc on upping the ERFA, you might be better off in the short run to revert back to synthroid, somewhere in the 100 to 125 mcg range, while you figure out what to do next.
Re slow release. First, if you go that way, you still need more than what you are getting now. I don't believe that you will find commercially available slow release NDT. The NDT that is in tablets is known to pharmacies as "Thyroid" or "Thyroid USP" or "Desiccated Thyroid USP" (see WIKI). Compounding pharmacies can make "slow release" or "sustained release" capsules for you. Simply phone a local compounding pharmacy and ask them.
Another option is synthroid along with slow release T3. That is what I use. The pharmacy calls the T3 "SR Liothyronine". I went that way after reading the paper cited below; there is a ton of practical advice in this paper.
Hypothyroidism: Optimizing Therapy with Slow-Release Compounded Thyroid Replacement, by Martin Milner, ND., published in International Journal of Pharmaceutical Compounding, July/August 2005.
which can be found here:
http://www.townsendletter.com/FebMarch2007/hypothyroid0207.htm
1 Comments
I’ve never been on anything other than Erfa and compounded desiccated thyroid. A year ago I started having horrible palpitations that seemed to be associated with hormones and slow heart rate. They were so bad that they would wake me up at night and wouldn’t let me sleep. I went to various doctors and no one could figure out what was wrong with me.
They ran some tests and all the tests came back “normal” but my FT3 was very close to the bottom. My TSH was >3 and my FT4 was far from optimal. I had all the symptoms of hypothyroid and positive Hashimoto’s antibodies. I did some research and realized that the US and the UK would consider my test results borderline hypo and that my heart palpitations were probably related. I tried to go the MD route but it seemed complicated and it was taking forever. I ended up seeing an ND and doing a trial on desiccated thyroid. Within a month or two my heart PVCs were gone but I still had some hypo symptoms. My body seemed to be reacting very quickly to the point where my naturopath was concerned that I would go hyper. That’s why it’s being upped so slowly.
My naturopath mainly seems to care about my FT3 and FT4 levels and she definitely wants them higher than they are now. The problem is that my family doctor and most MDs I’ve seen are mostly concerned about my TSH level and they won’t do anything that goes against the guidelines. They don’t seem to trust NDs or desiccated thyroid and they really want me to me to see an endocrinologist. I can’t just ignore what they say because they’re the ones sending me for blood work every time my naturopath ups the dose (I can’t afford to pay for blood work out of pocket). How do I convince my doctors that there’s nothing wrong with having a very low TSH when you’re on desiccated thyroid?
They ran some tests and all the tests came back “normal” but my FT3 was very close to the bottom. My TSH was >3 and my FT4 was far from optimal. I had all the symptoms of hypothyroid and positive Hashimoto’s antibodies. I did some research and realized that the US and the UK would consider my test results borderline hypo and that my heart palpitations were probably related. I tried to go the MD route but it seemed complicated and it was taking forever. I ended up seeing an ND and doing a trial on desiccated thyroid. Within a month or two my heart PVCs were gone but I still had some hypo symptoms. My body seemed to be reacting very quickly to the point where my naturopath was concerned that I would go hyper. That’s why it’s being upped so slowly.
My naturopath mainly seems to care about my FT3 and FT4 levels and she definitely wants them higher than they are now. The problem is that my family doctor and most MDs I’ve seen are mostly concerned about my TSH level and they won’t do anything that goes against the guidelines. They don’t seem to trust NDs or desiccated thyroid and they really want me to me to see an endocrinologist. I can’t just ignore what they say because they’re the ones sending me for blood work every time my naturopath ups the dose (I can’t afford to pay for blood work out of pocket). How do I convince my doctors that there’s nothing wrong with having a very low TSH when you’re on desiccated thyroid?
Test results:
TSH: 0.29 (0.3-4.0)
Free T3: 3.6 (2.6-5.8)
Free T4: 9 (9-19)
I'm on desiccated thyroid (morning: 45 mg, afternoon 30 mg). My TSH and FT4 FT4 are borderline low. I feel pretty good so I don't know what this means.
TSH: 0.29 (0.3-4.0)
Free T3: 3.6 (2.6-5.8)
Free T4: 9 (9-19)
I'm on desiccated thyroid (morning: 45 mg, afternoon 30 mg). My TSH and FT4 FT4 are borderline low. I feel pretty good so I don't know what this means.
Before discussing your latest results, we need to know if you delayed your morning dose of med until after the blood draw for those tests. If not, then what time did you take the med and what time was the blood draw. Even more important, feeling "pretty good" is not definitive enough. Do you have any symptoms at all?
1 Comments
Yes I delayed my morning dose. The last time I took my thyroid medication before the blood draw happened ~26 hours before.
I have relatively mild memory problems (compared to before, my friends used to think I have Alzheimer's -like memory).
Occasional Hashimoto's face.
I have relatively mild memory problems (compared to before, my friends used to think I have Alzheimer's -like memory).
Occasional Hashimoto's face.
I am somewhat surprised that you seem to be doing pretty well on that dose, which is not even an average daily replacement amount of thyroid med, as discussed previously by telus2. OF course, delaying your med dosage means that your levels are near their low for the day, but your FT4 is at bottom of the range, and your FT3 is only at 31% of its range. Even though everyone can have different levels at which they feel best, both of these levels are lower than many of us have found to be adequate to relieve hypo symptoms. The goal of treatment is to titrate your dosage so that your FT4 and FT3 levels are high enough to relieve hypo symptoms, but without going so far as to create hyper symptoms. Accordingly, I think you could benefit from a small increase in dosage, which I am sure will be a problem with your doctor, due to resultant low TSH. I have discussed all this in prior messages, but I am sending you a PM with further info. To access, click on your name and then from your personal page click on messages.
1 Comments
Thank you Gimel. My thyroid doctor said that for now I'm going to stay on the same dose, because it seems like I'm doing well on it and she thinks that my FT4 levels will probably increase slowly overtime. She also said that my TSH is normal but too low to up my dose because we don't want to do it too fast. We want to give the body time to adjust and if needed we'll up it more in the future. For now it seems stable and relatively symptom free.
I agree with my doctor. I wouldn't want to up my dose right now because I feel fine and I don't want to take unnecessary risks. She's retesting me in 3 months and if I experience symptoms before then I can always make an appointment with her to change my dose.
As far as my TSH goes, my other doctors are the main issue here, not my thyroid doctor. They like to follow the guidelines and we want to keep them happy. My current TSH seems fine, but if it drops any lower they'll probably bug me about it and refer me to a specialist and I really don't want to have to deal with that unless it's absolutely necessary.
I agree with my doctor. I wouldn't want to up my dose right now because I feel fine and I don't want to take unnecessary risks. She's retesting me in 3 months and if I experience symptoms before then I can always make an appointment with her to change my dose.
As far as my TSH goes, my other doctors are the main issue here, not my thyroid doctor. They like to follow the guidelines and we want to keep them happy. My current TSH seems fine, but if it drops any lower they'll probably bug me about it and refer me to a specialist and I really don't want to have to deal with that unless it's absolutely necessary.
I recently had my thyroid levels checked.
TSH: 0.14 (0.34-5.0)
FT4: 11 (12-22)
FT3: 4 (3.5-6)
Sometimes I still experience some hypo symptoms, but overall I'm doing a lot better than before.
TSH: 0.14 (0.34-5.0)
FT4: 11 (12-22)
FT3: 4 (3.5-6)
Sometimes I still experience some hypo symptoms, but overall I'm doing a lot better than before.
Are you currently taking Thyroid medication? If so what are you taking and what is your dose?
I assume that you ARE already on thyroid med.
Are you sure that the T4 levels and ranges are for FREE T4?
The numbers and range look more like what is normally seen for "total T4"
Regardless, You are BELOW or in the basement of BOTH results. And it is no surprise that you feel Hypo.
The Dr's are all wound up and ONLY focusing on TSH which is useless at this point.
The only suggestion I would have at the moment to discuss with your Dr is this. If your thyroid is suppressed which is what the TSH suggests. That is, your thyroid gland is producing little to nothing. With that truth. It would then mean that the Free T4 and Free T3 levels that you are living with are ONLY the result of the medication. And BOTH levels are extremely low or below range. And your symptoms are consistent with HYPO.
So you have 3 very important indicators that you are Hypo. BOTH blood level tests and most importantly your symptoms! These should WAY overpower the useless TSH test.
Put another way. You could ask your Dr's. If you removed the TSH test from the process. And you presented ONLY with the Hypo symptoms AND extremely low or BELOW range thyroid hormone levels. What would be their opinion of your condition, and based on that, would they recommend a dosage increase, or to continue letting you suffer hypo symptoms?
I assume that you ARE already on thyroid med.
Are you sure that the T4 levels and ranges are for FREE T4?
The numbers and range look more like what is normally seen for "total T4"
Regardless, You are BELOW or in the basement of BOTH results. And it is no surprise that you feel Hypo.
The Dr's are all wound up and ONLY focusing on TSH which is useless at this point.
The only suggestion I would have at the moment to discuss with your Dr is this. If your thyroid is suppressed which is what the TSH suggests. That is, your thyroid gland is producing little to nothing. With that truth. It would then mean that the Free T4 and Free T3 levels that you are living with are ONLY the result of the medication. And BOTH levels are extremely low or below range. And your symptoms are consistent with HYPO.
So you have 3 very important indicators that you are Hypo. BOTH blood level tests and most importantly your symptoms! These should WAY overpower the useless TSH test.
Put another way. You could ask your Dr's. If you removed the TSH test from the process. And you presented ONLY with the Hypo symptoms AND extremely low or BELOW range thyroid hormone levels. What would be their opinion of your condition, and based on that, would they recommend a dosage increase, or to continue letting you suffer hypo symptoms?
1 Comments
Thank you flyingfool. Yes. I'm on 75 mg desiccated thyroid (morning: 45mg, afternoon: 30 mg).
These are Canadian reference ranges for FT4. The labs here don't seem to use the same units as they do in the US (and possibly other countries?). I'm not sure why. Canada: pmol/L, US: ng/dL.
I've been on this dose for the past 6 months. My FT4 may be slightly below the low end of the reference range, but it's better than it was 5-6 ago. My FT3 is significantly higher than it was just a few months ago (it was low/very low normal). I also feel better than I did. My doctor says that my TSH is fine. She doesn't think it's too low. Her goal is to get my FT3 and FT4 to the middle of the reference range but she says it's going to take time. She doesn't want to rush it because she knows I'm deathly afraid of going hyper because of my past experiences.
My thyroid is finally stable after over a year of instability. At this point I just want to wait and see what happens because my symptoms are relatively mild and tolerable (which, they weren't before). Hopefully my levels will continue getting better and closer to the optimal ranges overtime.
These are Canadian reference ranges for FT4. The labs here don't seem to use the same units as they do in the US (and possibly other countries?). I'm not sure why. Canada: pmol/L, US: ng/dL.
I've been on this dose for the past 6 months. My FT4 may be slightly below the low end of the reference range, but it's better than it was 5-6 ago. My FT3 is significantly higher than it was just a few months ago (it was low/very low normal). I also feel better than I did. My doctor says that my TSH is fine. She doesn't think it's too low. Her goal is to get my FT3 and FT4 to the middle of the reference range but she says it's going to take time. She doesn't want to rush it because she knows I'm deathly afraid of going hyper because of my past experiences.
My thyroid is finally stable after over a year of instability. At this point I just want to wait and see what happens because my symptoms are relatively mild and tolerable (which, they weren't before). Hopefully my levels will continue getting better and closer to the optimal ranges overtime.
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